Living In Defiance Of Early-Onset Parkinson's Disease

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Because I Can

Now, I know that any parent would have the tendency to think the same thing. It’s only natural that a father would think that his kids are exceptional. I’m a rational thinker, and I know that statistics applies to this topic, just as it does to any other subject where there is a distribution of possible states. The normal distribution, the “bell curve,” applies to my children just as it does to everyone else.

My kids are, nonetheless, truly exceptional people.

I don’t take credit, although I am probably responsible for some of their characteristics. My own father used to tell me (half-jokingly) that, regardless of whether the issue was genetics or environment, he was completely responsible for any successes I might have during my life, and any failures were just the result of my inability to live up to my potential. He said other things, too, and I was never completely sure when he was serious.

If credit is due in the case of my own children, though, it’s to Amy (my wife and their mother), or to them as individuals. They have shown a remarkable ability to overcome well-intentioned parental errors, and they both are kind, good-hearted people that I would be proud to know even if I were not related to them.

My kids and I (and my daughter’s husband, to whom I am obviously not related, but who I claim as one of mine anyway) are embarked on an adventure. On June 2, we are participating in the Atlas Ride of the Texas 4000. The Texas 4000 is a yearly awareness and fundraising bike ride for cancer research managed and conducted by an independent student group at The University of Texas at Austin. The first Texas 4000 was in 2004, and my son Andrew rode in 2010.

The “4000” in the name signifies the distance of the ride. The Texas 4000 is a 70-day bike ride from Austin, Texas to Anchorage, Alaska. That’s over 4000 miles, and the entire team rides the whole way. I can’t even conceive of the dedication, spirit, and leathery buttocks required to achieve such a feat, but a new group of Longhorns has been doing it every year for the last fourteen years, and my son is one of them. I said he was amazing; I didn’t say anything about his common sense.

I’m not quite up to the challenge of 4000 miles in 70 days, but with the support of Andrew, Rebecca, and Chris (and Amy, remotely – she’ll be in the library finishing her Master’s degree) I’m going to try to do 50 miles in one day. The 50-mile Atlas Ride is the first day of the Texas 4000, and is open to the public. Chris, Andrew, and I will ride, and Rebecca (because she is smarter than all three of us combined) will drive my truck to the finish line, or to wherever I happen to stop. Afterward, there will be beer and barbecue for them, and levodopa and Apokyn for me, and I hope to be able to report that I finished. It’ll be hot and hilly, but we’ll have fun anyway.

So why am I doing this? Primarily because I love my kids, and any excuse to have them around me is worthwhile. There are fewer opportunities to do things like this as we all get older, and we have to take them when they come.

Part of the reason, though, is that I still can. It will be a stretch, but I think I can ride 50 miles in Texas June heat. I don’t know that I’ll be able to next year, though. The PD medications don’t work as well as they used to, and I spend more time “off” during the day. Labels like “advanced” don’t mean anything with this disease, since it’s different for everyone, but I know it’s progressing.

Last week, I started taking the primary Parkinson’s medication (levodopa) as a liquid, every hour. The goal is to control the medication level better, so it still manages the symptoms, with less of the debilitating side-effects like dyskinesia. I already have DBS, and it’s working as well as it can. I’ve tried every Parkinson’s drug out there, and I take the ones that work for me. All the “big guns” are already deployed, and there’s not much else to do from a medical perspective.

I can still exercise, though. I can still volunteer and talk to people about how and why to live well. I can still set audacious goals and try to achieve them. And although it’s more difficult to communicate it well, I can still love my kids and my wife.

Have you met them? They’re awesome.

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5 thoughts on “Because I Can”

Larry Haron

Wow. Corey, you continue to amaze and shame me all at the same time! Will there be a drone over your head with a little umbrella and fan blades keeping you cool? I guess the umbrella would negate necessary draft so forget that. I’m a musician not a scientist like yourself. Proud of you and please ride your bike to Atlanta. Or I’ll just come to SA. Love you, my friend. You are an amazing blessing.

Since we are often tapped as resources to assist the newly diagnosed and still working, I was thinking we save and compile our “advise” – both written and what we recall saying – toward the preparation of an article or perhaps even a book. Of course, this would be under the guise of opinion and advise, expressly noted the information contained therein is based on our own personal experiences and reflect the personal opinions formed thereof, and no way represents anything scientific, blah, blah, blah. And to that we’d add as much leaglaeese to hold harmless the DPF, you, me and anyone else.

OK, so after all that, what do you think?

I’m doing something almost the same – writing an article to help PWPs select the best cycling option, comparing traditional bicycle(s) to an bike and to a tadpoles style recumbent tricycle.

Corey, your dedication and love for your amazing wife & children and your passion for life are inspiring. I’m honored to know you and grateful beyond words that my son not only found the love of his life, but that he has joined a family that loves and appreciates him as his father and I do. May you always have the strength, resources, knowledge, and support to keep on moving, to keep on fighting, to keep on keepin’ on!